Hi Jody,

After reading your post i just had to reply to you even though i can see all the other girls have given you loads of words of encouragement.  this website is a godsend to all tof paerents i used to check it every day in hope i would find the answers to my questions.  when it said read what is only applicable to you, at the time i couldnt see what that meant however nearly 2 years down the line i can honestly say that it is a good thing as you just dont know how daisy will progress.  my daughter freya was born in april 07,  not knowing to us that she had a tof it came apparent 2 days later after i kept saying that something wasnt right, finally a midwife took notice and she was taken to scbu where a day later they did a scan and it was diagnosed we got rushed to norwhich hospital and she had the join at 3 days old.  i have to say i dont think i have ever cried as much as i did that week after her diagnosis, seeing her go to theatre then sitting by her bedside feeling helpless.  when we finally got her home 5 weeks later i thought stupidly that it was all over and we could get back to normal living,  was i wrong.  about a week later she was not feeding at all and would only sleep in her car seat but the noise she was making was hurendouse.  when i took her back to the hospital they said she could not have a stricture so early on however a barium scan showed it had strictured to nearly shut.  we got sent back to norwich and then because they did not have the aneasetist available we had to wait a whole weekend nil by mouth which was awful.  after a while she just stopped crying for milk.  but we got over it and had the stricture dilated and she had a ng tube put down.  i then had to tube feed her for 5 months in between dilatations which took some getting used to.

reading your post brough it all back as i was just the same.  i had a 2 year old son who was wandering where mummy and daddy were and after the 3rd dilatation it came apparent that we couldnt both keep going to the hospital together so we took it in turns and the other would stay at home with reece.  most of the time it was me who went though. . 

Freya had a verry tough stricture and eventually had 10 dilatation all 3 weeks apart.  after each dilatation i would ask the surgeon the same question,i.e, how many do you think she will need, and he just kept saying it will eventually stay open,  he likened it to an elastic band, he said if you kept stretching an elastic band it will eventually stretch and thats what happened with freya

Her last stretch was at 9 months old.  because she had had so many i couldnt believe that that was the last one however she has gone 1 year without a stretch.  i wish i could show you a picture of her as she does not look like the same little girl who at one point had to have a canula in her head as all her veins had collapsed.  she is so happy enjoys everything would eat everything if she could,.  she is always laughing despite her eating problems loves playing with her brother and friends.  i would say life has returned back to normality apart from the out patient appointment which are 6 months apart and her eating.  im resigned to the fact that she will not probably eat normally till she is about 4.  i do get upset when she is sick on something that should be easy to eat and at times i wander if she will ever eat normally however i know that one day she will and i have to look at where we were a year ago. 

one thing i have to say that kept me going is trying to keep some kind of normality to our life in between the caos of hospital trips and the worrying if she was getting another stricture.  i tried to carry on with life as normal.  i still had reece to consider so in between hospital appoinments i tried to go to the same todler groups that i did before, meet up with friends. went shopping and even managed the odd drink out which is a must!!  doing that alone will keep you sane. 

its hard at the start but it will get easier and you will come to know what the signs are of daisy getting a stricture and eventually she wont need any more dilatations. i think eventually we become the experts in this condition as we are living it.  if you ever want to contact me just pm me.

Take care

forgot to mention freya is on omeprazol 2 tablets a day.  we disolve it and mix it in ella’s kitchen fruit puree. she loves it and is none the wiser.  she has it at tea time.

all our love rachel, (freya 21 months)
x

JodySpice - 06 January 2009 09:35 PM

General Question

How do you write outside the quote box when replying?

click on qoute, then ensure start typing your reply after the last ‘qoute’ i always scroll down a couple of spaces before responding.

my email is .(JavaScript must be enabled to view this email address)

number is 07729 189726

Ive just joined today and have managed to take some solace from these posts as Nathan was born on 25th Nov and is still in John Radcliffe. We knew that he had a posible Tof prior to delivery and managed to get to full term with a reduction of 3L at the end of Sept, He also has a very small Jaw and other smaller issues.
Currently he is still having Desats dropping to 50% and recovering himself with regular suctions and repositioning.
As from this week they are “trying a contunous syringe drive to stop the reflux”. They have also put in a tube through the nose to just above his voice box so see if that improves his airway.
at least he isnt on the vapour-therm as he didnt like it and spent his waking hrs trying to remove it, unfortunatly very successfuly even with both arms splinted !!!!
His ng tube is a continual challenge the record being 4 replacements in one shift. Although I think he has left it for the last 2 days

Im glad to find that we (my wife and myself) are not alone and can now contact people who know how we feel, and also get information on what might happen in the future.

Sorry for the Ramble but once I started I couldnt stop

Darrell

jayne.frances - 06 January 2009 10:54 PM

I was a nervous wreck as she gradually got worse and worse duri9ng the week, the slightest thing we did caused her to go blue, although there was a bed for me in the cubicle with her i decidid not to stay there as I was too frightened because when her sats alarms went off the nurses just used to look through the window to see if i thought i needed them - of course i bloody did!After 4 days on this ward she was transferred back to intensive care. It sounds mad but I was pleased, the pressure of coping with the cyanotic ‘do’s’ was just too much.

Hello Jayne.

Thank you for replying to me, I feel honoured to say you haven’t replied before.

Frances has certainly been through it and so have you ((((((((big hugs)))))))). I completely understand bout those blue dos and the pressure of dealing with them. I feel very fearful of being alone with Daisy as she has gone blue a few times like hen crying, feeding etc… And I didn’t know (don’t know) if this is normal? Even having had 3 babies before I am always unsure what is ‘normal’ baby behaviour now.

Intensive care wards were the best place for Daisy too, I always felt a sense of relief when she was in ICU or HDU as when she was allowed onto a normal children’s ward I was so shocked at the difference and then paniced about her being left to cry/choke whilst I had to leave her to be with the children whilst my husband went to work.

Your journey with Frances sounds like such a trauma but i bet you were happy to be home but like me now scared at the responsibility of it all. I sometimes wish I wasn’t around and that it had all ben a bad dream because i find the pressure of coping with Daisy when I see her with mucus blocking her airways makes me feel sick to the core and i almost have a heart attack (drama queen!)

I can’t believe they had’t picked up on the fluid around her heart sooner! Did you know Frances was a TOF before you had her?

9 dilitations is some going! I take comfort in the fact the gaps in between them got longer. I hope that happens to me. I keep thinking Daisy will be in every 2 weeks. I could handle that as long as it was planned. It’s the emergancy part i hate when she just seems to striture immediately and then hand in hand has breathing difficulties too. I don’t know too much about the human body/biology but TOF has opened my eyes to so much. I am having to learn the basic functions before i taccle the big stuff. Like for example, I didn’t know how the oesophogus worked! I asked could they not put some sort of ring in it to keep it open! I thought it was just a tube (*embarrassed naivity*).

What progress Frances has made eating that full jar!!! Fantasti!! and 13lbs 13 oz doesn’t sound small to me especially considering what she has been through.

Thanks again for getting in touch xx

RACH - 06 January 2009 11:05 PM

.... i have to say i dont think i have ever cried as much as i did that week after her diagnosis, seeing her go to theatre then sitting by her bedside feeling helpless.  when we finally got her home 5 weeks later i thought stupidly that it was all over and we could get back to normal living,  was i wrong.

Hi Rachel,

Yes, Claire gave me your email address but i lost it having written it down then deleting Claire’s email. I have a son born in April 07 just by the way. Thanks for replying to me on here, Claire said you might be able to help me because at the time of Daisy’s 1st stricture I had never met anyone else with a TOF babay and i thought strictues were something that happened at arund 6-12 months not in the early day and not recurrent!

I can totally undertsnad what you say above as i too thought the same thing. I thought we could somehow move on and get back to normality. I even thought i’d be taking Daisy home the day after her TOF op, I was so naive to the enormity of it all and still am i suppose. It bugs me sometimes when people say to me “the worst is over now and at least she’s home”. It’s not true for me, I feel like the unpredictability is far worse now as in life threatening situations the Surgeons aren’t there- it’s just me :-(

When you mentioned that noise, it immidiately hit home. Daisy makes that noise and it scares me to death. She hasn’t made it this week since her 2nd stretch so i’m guessing it is something to do with starting to stricture?? Is that right?? Is it a sign to look out for? The nil by mouth is just awful as you watch your poor baby crying hysterically and sucking so hard on their dummies. I guess like me your Freya couldn’t have an ng tube down as it was almost shut. Daisy couldn’t even swallow saliva and had a replogal (sp) tube in too.

Why did you have to tube feed Freya inbetween dilatations? Sorry to sound thick?

I know Freya has had a lot of dialitations and you asked your surgeon how many will she need? My surgeon has said if it keeps stricturing then they will operate again (in about 6-10 onths approx)to remove the lower pouch and pull up the stomach. Is this normal then or not? daisy’s lower pouch is very poor quality tissue and there is more than a 90% calibre difference between the top and bottom pouches hence the narrowing is always there even after dialitation

I can’t believe your daughter has gone 1 year without a stretch! That is amazing! Really! Daisy veins also collapsed after 7 attempts to fit a caula last week they said she’d have to have in in the head or main vein in the neck but luckily the 8th- yes 8th attempt worked and i was so thankful to god as her eys were buldging she was crying so much.

What is Freya’s eating like? She is same age as my son so it is easy for me to imagine Daisy in the future iykwim? Is she sick a lot? Y’ see Daisy isn’t sick hardly ever.. so is this normal too? She vomits pure milk/saliva when stricturing but besides a few small posits sometimes when feeding there is hardly no sick. Is lack of this GOR (reflux) normal? Perhaps it’s the omeprezole keeping it all down??

Anyway, hope to hear back from you when you have a minute.

Thanks for getting in touch. x

nathansDad - 06 January 2009 11:52 PM

Ive just joined today and have managed to take some solace from these posts as Nathan was born on 25th Nov and is still in John Radcliffe. We knew that he had a posible Tof prior to delivery and managed to get to full term with a reduction of 3L at the end of Sept, He also has a very small Jaw and other smaller issues.
Currently he is still having Desats dropping to 50% and recovering himself with regular suctions and repositioning.
As from this week they are “trying a contunous syringe drive to stop the reflux”. They have also put in a tube through the nose to just above his voice box so see if that improves his airway.
at least he isnt on the vapour-therm as he didnt like it and spent his waking hrs trying to remove it, unfortunatly very successfuly even with both arms splinted !!!!
His ng tube is a continual challenge the record being 4 replacements in one shift. Although I think he has left it for the last 2 days

Im glad to find that we (my wife and myself) are not alone and can now contact people who know how we feel, and also get information on what might happen in the future.

Sorry for the Ramble but once I started I couldnt stop

Darrell

Hello Darrell

As you can guess I am new too. Sorry to hear you have gone through all this trauma like me and all the other people on here.

So your little son is still in hospital right? It’s so tough when you can’t be with them but he is in the best place ( i know eeryone say that).

Really nice to hear from you and hoping for a speedy recovery for Nathan.

Jody, I remember someone posting this before - it was (and is) so true for us… hope it help you too…

WELCOME TO HOLLAND
When you’re going to have a baby it’s like planning a fabulous vacation trip – to ITALY. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some phrases of Italian. It’s all very exciting.
After a few months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says, “Welcome to Holland!”
“HOLLAND!?!?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be going to Italy! All my life I dreamed of going to Italy!” But there has been a change of flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible and disgusting place full of pestilence and disease. It’s just a different place. So you must go out and buy different guide books. And you will learn a whole new language. And you will meet new people that you may never have met in Italy.
It’s just a different place. It’s slower paced than Italy, less flashy than Italy, but, after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has tulips, Holland has Rembrandts.
But everyone you know is busy coming to and from Italy and they are all bragging about what a wonderful time they had there. And for the rest or your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
The pain of that loss will never go away because the loss of that dream is a significant loss. But, if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about HOLLAND.

thanks for the poem, so true and lovely x

I had some choking training today and also a refresher on the resuscitation. Daisy was 9lbs 13 oz today at 6.5 weeks old so i am happy she has put on 2lbs. Great news on the stone Jayne x

JodySpice - 06 January 2009 04:53 PM

I also wanted to ask people about anti biotics??? Daisy has broncholitus (sp) and they haven’t given me any anti-biotics or inhalers at all- is this ok? Should I ask for some?

 

Hi Jody
I would ask for antibiotics and an inhaler. When Eva had bronchiolitus back in October 07 we were given and inhaler b the hospital and it did help. She didn’t have any antibiotics and it took her ages to get back to normal. THey always say they don’t need them because it is viral but since then our GP has given Eva antibiotics when she has a cough (worse than the normal cough she has) and a fever to prevent anything going on to her chest…since we have been doing this she has been so much better. We also have a supply kept at home ready to mix if we need them and cannot get to the doctor. I think there are some leaflets somewhere on this site that outline why TOFs benefit from antibiotics when other children might not..It might be worth printing one off and shoewing your GP….But bascially I think the theory is that Tof children find it so much harder to clear their airways and as a result suffer a lot more with colds going on to their chest etc….. Also I’m not if it will be too late this winter but since Eva was born she has had a flu jab for the winter in October. hope that is useful…. Anyway hope all well with you and Daisy at the moment!
take care
Claire xx

Hi Jodie

I can’t imagine what you are going through but I read your post and just thought I would say hello and give a little encouragement.
I am 30 year old TOF and was treated at Manchester Children’s Hospital and at St Marys ( I am from Preston). I know my mum and dad went through a tough time with me when I was a baby(no TOF support back then) but I just wanted to say that I owe my life to those hospitals and you can rest assure that they will take good care of your little one. I was discharged from Manchester when I was 16 (they kept and eye on me once year) and although I occasionally get food stuck I am now a “normal” healthy woman.
I don’t remember anything about the operations I had (they moved some of my colon into my throat to replace the missing oesophagus)but I do remember learning to cope with food getting stuck, which was a steep learning curve. I now know my throat really well and we are the best of friends! I know what I can eat easily and what I can’t, and how to help food go down with minimum fuss. It is just everyday life for me and I don’t know any different.
I suppose all I am trying to say is although right now you are going through hell, there is definitely light at the end of the tunnel. Don’t be afraid to ask questions and ask for help. My mum still sees our health visitor every Christmas because she became such a great help and friend to our family. They exchange bottles of wine and have a catch up. I don’t think I’m even part of their conversations anymore!
I wish you all the best for the future.
Emma x

Hi Emma
Thanks for getting in touch. It’s really nice to hear from a grown up TOF. I bet you can’t believe what your body has been through! It’s reassuring to hear your story. Best of luck xx

Sioned

Hello- thanks for taking time out to reply. And again, honoured to be your first x

Please forgive my ignorance but how do you say your daughter’s name?

You have your hands full like me with them so young. I saw your plea (just now) about ‘blue dos’. Sorry you didn’t get any replies but there seems to be some now. I know what you mean how totally scary it is and having to call an ambulance in itself is scary. What a long drive you have to Alderhey- Is that where she is managed? Is that the closed specialised hospital to you?

It’s great to hear how Begw has stopped having the blue episodes & dialitation. How many stretches has she had? I also have apneor mats for my Moses baskets for Daisy- total piece of mind.
 
How do you feel about weaning? Are you getting support through it? I will be very scared to wean when the time comes.

If you don’t mind telling me your story, what was Begw’s initial operation like? Does she have any other implications?

I have taken note of your number and when I feel ready to properly talk about things I may well give you a call- and THANK YOU once again x

Dear Jody,
  I am just wiping away the tears as I have read your thread. My thoughts are with you and your loved ones at this difficult time but trust me there is light at the end of the tunnel. Our TOF children are something very special in a special kind of way if you know what I mean. My son is now 2 and has an amazing character and strength with whatever is thrown at him. He has had is ups and downs with plenty of hospital visits and ambulances and an Aortopexy for severe Tracheomalacia in Feb last year. The best advice I can give you especially being an experienced mum as you are is ‘mum knows best’ and go with your instincts. It toook me 5 months of hell and 3 serious’blue spells’ and discharging myself from hospital and going to GOS for a private app to get Kyle diagnosed with Tracheomalacia. I felt like I was taking the world on all alone but what a relief I felt when they told me after a bronchoscopy as this had been my feeling all along but no one would listen to me, I was loosing hope! Still now I look at Kyle especially when he is sleeping and have a good old cry, amazed at what our little ones go through and what they come out like at the other end!
  Kyle is my first and I had doubts about any more after his diagnosis however am currently sitting here with a baby kicking me from inside at 28 weeks pregnant. I am very excited about becoming a mum again but also have mixed feelings.

  Hope you have some time with no hospital trips and that you get some faith that all will be good at the end of the rocky road by all the positive stories on this website.
Take care and make sure someone takes the time to look after you every now and then.

Best Wishes Suzanne

Hi Suzanne

Firstly, CONGRATULATIONS o your pregnancy xxx aren’t you barve! It really comes across in your post. Such strength and etermination to go through all that with Kyle. What was his initial repair like? Did he have the traceomalacia when he was discharged at first?

It does all seem so scary at this stage but i do take great comforst from all the replies I have recieved and build from that. I just take each day one at a time. We got Daisy’s chromosome results on Thursday and she doesn’t have Di George syndrome or anything else for that matter so that was a huge relief!

Our local newspaper are running a story on her and will update in April when we have her Christened. We just want to raise awareness and possibly funds of TOF/OA.

I’ve lost my train of thought now, i’m replying to you and can not remember what was in your post. Just to say thanks for taking time out to reply to me though.

Jody x